My Stiff Little Fingers

Friday, 19 February 2016

I haven't written in a while with exams and everything, but one of my coursework essays was for my health,self and society class. I made the decision to write mine in relation to chronic illness. it was titled 'Critically discuss the loss of self when suffering from a chronic illness.' I thought it would be appropriate to chuck some of it in my blog. Don't worry i'm not gonna put it all, just the good bits and ill do another one with more later. A large aspect of chronic illness that is often not considered by others is the loss of self the individual suffers from. They struggle to retain who they are and to not be defined by their illness.Chronic illness is a very disruptive experience, or as Giddens (1979) states, ‘a critical situation’. He proposes ‘we can learn a good deal about day-to-day situations in routine settings from analysing circumstances in which those settings are radically disturbed.’ Ochberg (1994) stated that individuals live their lives in the context of ‘storied forms’, this can also be considered a narrative or biography. Every individual writes a ‘narrative’ of their life, it conveys their sense of self. When an individual is diagnosed with a chronic illness it disrupts their narrative and the person they are may fade away. The illness profoundly challenges who that individual is. It is the same as the idea of a bald man desperate to communicate his identity through his hair. The narrative is a way the individual can express their experience of illness. Narratives are of vast importance in the study of chronic Illness as a way of understanding the efforts individuals make to deal with their life and problems of identity that their illness causes. When an individual suffers from a chronic illness, everything seems the same, but it is not. They desperately try to conceive as sense of normality, but often fail. They are determined to appear to all others as leading a normal life, with no regard of the cost to their health. They do this because of the stigma attached to illnesses that are visible and noticeable to others.When an individual excludes themselves from their social group they socially isolate themselves and thus cause a loss of self. When they restrict their lives in this way, social isolation is almost guaranteed. Beyond family and work many chronically ill people will be socially isolated; they are simply not the person they once were.Their medical treatment is a major factor contributing to the isolation. This is due to the treatment taking place when the individual is alone and it causes their attention to be focused on themselves and not others. This experience of loneliness that they go through is one of much suffering.Those who are chronically ill are often not aware of how much their condition affects their lives. One woman can believe that she is often clumsy and that is why she drops things or in my case when i was under the impression that my fingers were swollen because of my weight or become of water retention. These individuals make intrepid efforts to live a normal life, even if it risks their relationships with others and their health. They feel if they do not live up to the expectations set for them by others, then they also fail to live up to the expectations set for themselves. Society dictates that to be a human being you must be able to function to the fullest extent, when an individual fails to do this they apologies to others and thus they are apologising for their existence in this world.There are three phases of disruption that occur in the unfolding of a chronic illness. First there is the disruption of assumptions and the behaviors that were taken for granted. This stage involves the individual paying attention to their body and any changes they were not conscious of. The second is a fundamental re-thinking of the individual’s narrative and self is involved. Lastly, they respond to the disruption and accept their situation has changed.In a study carried out by Kathy Charmaz “Loss of Self: a fundamental form of suffering in the chronically ill”, she discussed how several women in her study felt that being able to drive their cars was very important to them as it was one of the only ways they could be independent. It was one of the only ways that their lives were not restricted. Unfortunately, due to their arthritis and types of medication they would no longer be able to drive, and this reminded them that their lives are becoming increasingly restricted. A task that a normal individual takes for granted, is now being denied to them.When someone tries to return to normality and fails, they feel a kind of grief for their lost self. When they decide that they are incapable of living with a chronic illness in the way that they hoped, they discredit themselves. They start to view themselves as failures and a burden to those around them, and stop others from intervening in this spiral out of control as it leads to a loss of self.The loneliness caused by social isolation is more noticeable in those who live on their own. This is because they have a lack of social contact, resulting in a call from a relative or friend having enormous significance to the individual. This is comforting to them and assures them that their self-loss is not absolute, and they are valued as a human being. Some chronically ill individuals have disabilities that are not visible to others, they suffer discreditation because of them still participating in society and their illness being unknown to everyone else. For example is a diabetic was to attend a party in order to ‘keep up appearances’ they would have to avoid various food and alcohol and this could result in her being watched and judged by others who are not aware of her disease. This can be mortifying for the individual if they are confronted in a public place and therefore cause them to be ashamed of themselves. Even when the presence of the individual’s illness is recognised, issues still remain as others might not believe them. For example having diabetes is a good enough reason to not meet the social obligations of a party such as eating and drinking. When an individual suffers from a chronic illness and alleges they are in pain or tired or another symptom, this could be met with the accusation that they are using it as an excuse.

The chronically ill suffer from a loss of self because of the circumstances and environment under which they experience the illness. To suffer from a chronic illness is incapacitating and devastating and therefore is an attack on the self. This then leads to the individual assuming a limited life, which leads to fewer chances for them to fully form a valued self. When the chronically ill restrict their life it leads to social isolation, that then leads to them living a limited life and these both restrict opportunities for a constructive validation of their self.

Sunday, 4 October 2015

It’s hard to remain positive all the time. It’s hard to not
feel like this is some kind of punishment or karma for something I have done.
Despite having remained surprisingly upbeat and unfazed by my diagnosis 4
months ago, it’s becoming hard. When there is no end goal, no cure, nothing
that can be done other that trying to slow down the progression of this monster
inside me. That is what it feels like, like there is this horrible disgusting
evil thing inside me trying to make my life as hellish as possible. Even though
I win against it most days, there are times like now where I am too tired to be
positive and upbeat and I allow myself to be down and the monster wins.

I am so happy that I pushed the doctors to find out what was
wrong with me because I knew something wasn't right, if I had just ignored what
was going on I would be blissfully unaware right now. No matter how happy I am
that I have been diagnosed I sometimes wish that I had never gone to the
doctors and just left it because no matter how hard everything was before and
how much pain I was in, at least I wouldn't be suffering from the side effects
and lifestyle changes of these stupid drugs, the benefits of which haven’t even
kicked in yet. My hands and feet are still swollen and in pain. These drugs as
supposed to stop the pain and i am not allowed to take pain killers while on
the drugs. Every week I have to take 6 pills in a oner and then folic acid the
next day to help reduce the side effects, a few of which are; Bloody vomit,
blurred vision, confusion, seizures, hair loss, loss of appetite, tiredness and
weakness and joint pain (ironic). I have had my blood taken about 15 times in
the last 10 weeks I have had an MRI, x-rays of my hands feet and chest, 3
hospital appointments and have another one in a month where I probably have to
have another lot of MRI’s, X-rays and blood tests. I am not allowed to learn
how to drive, which is one thing I really wanted to do this year and now I have
no idea how many years I will have to wait. I can’t get pregnant while on the
drug because it would terminate the baby (this is obviously not a concern of
mine now but in the future trying to get pregnant will be a significant issue).
If I did want to get pregnant I would have to come off the drug for at least 6
months before even bothering to try and even then I would have to stay off them
for the duration of being pregnant and a while after during which time the arthritis
would begin to progress again. I can’t meet any guys because when I am out they
are all wasted which is awkward for me or they try and be nice and buy me a
drink and if I have already had 2 beers that night I have to tell them no which
makes me seem like a bitch. I then have to either tell them why I can’t drink
which would involve telling a complete stranger a really personal, upsetting and
embarrassing fact about myself or I lie and come up with another stupid reason
why I can’t drink which would be either; I'm pregnant or I am a recovering
alcoholic. This would most likely send them running for the hills. I already have insomnia and have done for a
couple of years but now I really really just want to be able to sleep because these
drugs are exhausting me and the only option I have left is sleeping pills and
the last thing I want to be doing is taking more pills.

I know all my other posts have been very humorous and light
hearted about what is going on, but at the end of the day I have spent the past
4 months terrified and the drugs that are supposed to help my symptoms actually
make me feel worse in every possible way. I have asked the doctors multiple
times how long I have to do this for and I haven’t had a straight answer out of
anyone which I assume means no one wants to tell a 19 year old that this is how
her life will be for the foreseeable future. I have googled ‘cure for arthritis’
and ‘new drugs for arthritis’ every other day for 4 months hoping that
something will pop up one day and yes there is work being done into a cure and
that is amazing but it will be 20 or 30 years down the line before I even get a
shot at being given it and it is too damn hard to even imagine having to be positive
for that long. In the meantime all I can think about is that I won’t be able to
get drunk on my 21st birthday or New Year’s Eve, I can’t do most of
the things everyone else can and it is a massive bag of horse shit.

To end this rant I see no other option than to go live on my
own in the countryside with my 5 dogs. But in all seriousness, this isn't some
suicidal blog post I just thought it was important to show that even though I appear
positive all the time, it’s impossible to be constantly optimistic and
sometimes I need to have a rant and complain and throw a shit fit about how
this isn't fair. I might be sad about it today but I know that tomorrow I will
be fine. Because regardless of how much this sucks ass, things could always be
worse. I am alive, I am not blind or deaf, I can walk, I have amazing family
and friends which some people can’t say and those are the people I truly feel
sorry for. No matter how bad it all gets, it would be 19438483 times worse if I
didn't have my friends and family.

To once again end on a happy or humorous note, I found out
that apparently the Loch Ness Monster did/does have Arthritis too. Odd.

Sunday, 13 September 2015

A massive aspect of all of this is the fact that I can't drink spirits and I can't have more than a couple of beers on a night out, therefore I can't get drunk with my friends. Fortunately for me, I have discovered in the past few weeks that I don't have as much of an issue with not drinking on a night out as I thought it would, I have pretty much the same amount of fun without the embarrassing escapades. I am fortunate enough to have some amazing friends who still want to go on nights out with me even though I am sober, there aren't a lot of 19/20 year old's who would want to hang around with someone who can't get trashed. I think that when things like this happen it makes you realise who your real friends are.
There is a poem I came across when I was angry and upset and it summed up exactly how I was feeling. It is great to have as a constant reminder, it is hard for me to explain why I find this poem so helpful but it is called 'Still I Rise' and it's super long so here are my favourite parts.

Does my haughtiness offend you?

Don't you take it awful hard

'Cause I laugh like I've got gold mines

Diggin' in my own backyard

Does my sexiness upset you?

Does it come as a surprise

That I dance like I've got diamonds

At the meeting of my thighs?

You may shoot me with your words,

You may cut me with your eyes,

You may kill me with your hatefulness

But still, like air, I'll rise.

As important as that poem is to me, it's a bit of a dark note to end on, so here is another arthritis themed joke to end on.

Sunday, 30 August 2015

One of the massive downsides of being a young person with arthritis is the fact that you can't drink spirits or get drunk thanks to everyone's best friend methotrexate.

Unfortunately, Leo is correct. Methotrexate is an aggressive drug used to treat some types of arthritis as well being used on those with leukaemia and other forms of cancer. It is knows as a DMARD, a disease-modifying anti- rheumatic drug. It dampens down the underlying disease process rather than just treating symptoms. However, methotrexate also reduces the activity of your immune system (your body’s defence system).The drug interferes with the growth of certain cells of the body, especially cells that reproduce quickly, such as cancer cells, bone marrow cells, and skin cells. It can lower blood cells that help your body fight infections and help your blood to clot. You may get an infection or bleed more easily. The reason you cannot drink spirits on the drug or drink excessively is because when the drug mixes with alcohol it can cause me to become jaundice and go into liver failure, to be honest I will give up the sauce if it means avoiding becoming the new character on The Simpsons.

I started taking methotrexate last week and today is my second dose and it will take months for me to see the benefits. On Wednesday it was my friend's 20th Birthday where she chose to have a 20 bar crawl which was pretty ambitious, even for my herd of alcoholics! My first time out not drinking and I knew it was going to be hard. It was actually fine, I had as much fun as my other friends, still stayed out till 3 and didn't have a crazy hangover like the birthday girl. The only part I was pissed about was everyone constantly asking why I wasn't drinking and I hadn't really told anyone about being ill other than my family and close friends, and I'm not one to share personal details about myself with anyone let alone complete strangers.So I just kept saying that I was on medication, to which the response was usually 'Aw fuck that! I drink when I'm on antibiotics all the time'. No. That is not the same thing! There was one guy when we were at the club who had been drooling over my friend all night, constantly coming up to her telling her she looked like Kendal Jenner, of course a very flattering comment at first, but this swiftly became tiresome. Later on he came over with a drink that he claimed to have got me. I wouldn't have taken it anyway cause as a rule of thumb I don't accept drink that I haven't seen poured especially from a slimy douche goblin. When I politely said no and explained that I was on medications, he said 'What the fuck is wrong with you just accept the drink, Jesus'. I have only been on this medication for a week and already I am sick of having to explain myself.

Looking onward to bigger and better things, in a couple of days I'm off to Dublin for a well needed break from everything. At the end of the day it is important not to care about what others think.

Monday, 24 August 2015

Writing this is a lot harder than I thought it was going to be but I think that it is something that I need to do. Whenever I heard the word 'Arthritis' I associated it with the golden oldie generation. I thought that it was what happened when some people got old and their bones started to turn to shit.
So, to be told when you are 19 that you have arthritis and realise that you have had it for a few years undiagnosed it comes as a shock.
I have been self conscious about my hands ever since I can remember, my fingers have always been a bit sausage-esque and swollen and I hated my rashes I would get but I was always told was just eczema. I would constantly go to the doctors to ask for help and I was met with various creams ranging from moisturisers to that of steroid. When it came to my swollen fingers I was told to lose weight and drink more water and then it would go away but it was only when I found I had constant chronic pain in my hands and feet that I was taken seriously.
I'm still not sure exactly why I have decided to write this blog and what its purpose will be, that is something which I assume will become clear as I write. I guess no matter how angry and upset I am about being ill, I am so happy that I pushed to find out what was wrong instead of sitting around and ignoring the problem and potentially leaving my hands to become so mangled that I would struggle to use them. I guess making young people more aware of arthritis and that it can affect anyone is the aim. To be honest I think it will make the whole process easier for me if I have this outlet and can talk to those who are going through the same thing.
The whole process can be terrifying in the space of less than a month I went from being a normal 19 year old to being poked and prodded having shit loads of information unloaded onto me, with a very short amount of time to process it. A month bombarded with MRI scans, feet hands and chest x-rays, blood tests every two weeks and various immunisations to stop me from getting ill.
If anyone is reading this and finds themselves in the same position as me and wants someone to talk to feel free to contact me or look at the list of various websites and groups that I put links up to that I have found useful.
I am still getting used to using this and working out what I am going to do but I will try and post as much as I can, as often as I can about what is going on and the various trials and tribulations of living inside a body which is attacking itself.